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5 Things Not To Say To A NICU Mom

One of the mom groups I belong to on Facebook is focused on providing information for breastfeeding mothers. I’ve learned a lot of good things there, but like any destination on the web, you find a mix of people who provide helpful, factual advice and people who, to be kind, don’t.

I’ve noticed quite a few questions on there lately from NICU moms who are doing their best to navigate that scary medical labyrinth with their tiny baby in the center. I try to answer where I think I can help, and I see other NICU veterans do the same. But it also seems like for each of us, there are three other well-meaning but misguided people who are pushing information that will likely end up frustrating the NICU mom if not outright setting her up for failure. And since I just so happen to have my own little platform here, I thought I would take a few minutes to put together a “5 Things Not To Say To a NICU Mom”:

1) “They’ll be home before you know it.” Well intentioned, yes. Helpful, no. I know from seeing good friends go through a devastating experience that it isn’t even always true – some babies don’t come home. Others are in the NICU for months fighting to meet their targets. Even for babies that are there for short stays, the time does not fly by.

2) “You’ll be fine pumping, I do it for work every day.” Having done both, I can definitively say that pumping for work is nothing at all like pumping for the NICU. The mechanics are the same, but the emotional investment is not. Taking a break from work to pump is not the same as shutting the portholes on your baby’s isolette and walking away to pump. When you pump at work, it is one of many things you do for baby as his mother, but in the NICU it’s one of the very few and you can feel an enormous amount of self-generated pressure to not mess it up. Work pumping is also not the round-the-clock commitment that NICU pumping is. So, as encouraging as you may think this is, it’s not. A better way to encourage a new NICU mom is to help her tie pumping to baby’s feeding schedule. It worked for me – as soon as his feeding tube or bottle was done, that’s when I would go pump. And at home I would pump at times I knew he was being fed. It keeps you involved in baby’s care and gets you and baby on the same schedule which is helpful when he comes home.

3) “There’s no reason you can’t breastfeed right away if you want to!” Actually, there is. Babies born at or before 32 weeks haven’t developed their ability to eat, and boys typically develop that later than girls. This means that a preemie may not have the instincts of knowing whether he is hungry or full, may not be able to suck or swallow, and the most dangerous part is that they are not able to regulate their breathing. They are also very, very small, and nursing is hard work. These tiny babies may not be physically strong enough to take in what they need, or may tire themselves out too quickly trying – and then the alarms start going off because breathing, oxygen, and heart rate plummet. That is terrifying, and certainly not the best possible thing you can do for your preemie. NICU doctors and nurses don’t discourage breastfeeding when it’s safe, and they don’t suggest starting with tubes and bottles as a power grab, there’s very good reasons behind it.

4) “Just hang stop signs on the crib not to give bottles or pacifiers, the staff works for you and have to listen to you.” No, no, no. First of all, your NICU nurses are your lifeline, and it does not do anyone any good to set up a confrontational relationship – especially not your baby! Second, your nurses are measuring every drop that your baby eats to make sure that he is getting the right doses of whatever medications he is on and also to be sure that he is digesting and gaining weight properly. Good nurses will absolutely include you in the baby’s care and explain why they are doing what they are doing, but tying their hands about not using tools that can help your baby because someone on the Internet told you to stick to a flawed principle is a bad idea. Just. Don’t.

5) “My baby was almost 3 weeks early, and he was able to X, Y, Z right away.” 37 week babies are not preemies. 35 & 36 week babies are borderline and may have challenges, but aren’t actually considered preemie. The younger a baby’s gestational age is, the more of their development they will be doing in the NICU. Things like learning how to eat, how to breathe while they sleep, and developing a regular heartbeat. Empathy is fantastic, support is needed and appreciated, but comparisons like this make new NICU moms even more anxious about “why isn’t he…?” than they already are. Best just to ask “How’s he doing? What are we looking for next?” and cheer on the little things.

Bonus no-no: “You’re his mother and know him best, you tell them (doctors) what to do!” Remember, NICU moms haven’t had a chance to get to know our little ones and what their normal patterns are yet. We may not have even held him. I am all for trusting your instincts, but the stakes are high and many decisions about NICU care really should be guided by the pros.

I hope this helps people who want to be encouraging get a better picture of some of the differences that preemie parents experience. Other NICU moms – what would you add to the list?

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8 thoughts on “5 Things Not To Say To A NICU Mom”

This was a terrific post! My 26.5 weekers were never really able to nurse and that broke my heart. I made best friends with my rented hospital grade pump and had the hooters out in every empty conference room in my office while I went back to work while the girls were still fighting in the NICU. When they came home, I took off work again for my maternity leave (unpaid leave, but I called it that because dang it, something ought to go as planned, right?)
Helpful tips I’d offer for those that have NICU moms in their life. 1. Make/buy food and bring it over. If you’re a really good friend, organize a group to take care of the family. My work friends made a sign up sheet and they brought over food for something like four months. I think I cried every time someone brought something for us. 2. Give the mom a hug and just let her talk. Chances are she’s dying to share the real feelings, not just the canned positivity we feel forced to puke out so that everyone can be reassured. Sometimes I felt like my job was to reassure everyone when really I was just barely holding it together. I came to resent phone calls that were made with the best of intentions because I was so sick of being positive. I just wanted to shut up and let myself feel scared.
That’s about all I’ve got. Thanks for a great post.

Fantastic points! Thanks for your input. And I totally get the disrupted maternity leave you mentioned. I’m very lucky that my company worked with me to extend my leave, but lots of women don’t have that kind of support and it’s really hard.

One thing I have learnt from being a NICU mom 3 times is that everybody’s experience is different some peoples information may work for others and completely fail for someone else just because it failed for that someone else doesn’t mean it won’t work for the next 20.
NICU was hard it never got easier but we survived despite the stupid comments like “at least with you at home and them in hospital you don’t have to get up to them in the night” no but I do have to get up to pump to make sure they have enough milk to go down the NGT tomorrow

I think most people’s hearts are in the right places, but if you’ve never dealt with it and your only experience is with a full-term baby it can be hard to relate. The comments on those threads that alarmed me were the ones that seemed to set up a confrontational relationship between a mom and the nurses. I always feel bad when I see moms complaining about something a post partum nurse did, but then again you’re only around them for 48 hours. I don’t think that moms who had their babies with them and were able to leave the hospital with their babies understand the differences between that and what NICU nurses do. Of course all of this is subjective, but I would really hate for someone new to the NICU to take away from the comments that there needs to be conflict with the nurses, or that the medical staff are just formula bullies.

absolutely I had someone visit me when my son was on a ventilator she had a prem but he only needed CPAP (never thought I’d say only CPAP until you’ve been there!) and argue with NICU nurses to let me hold him, it broke my heart for almost 2 months i couldn’t cuddle him but I knew it was what was best if we had’ve knocked his ventilation tube trying to move him who knows what would’ve happened